Tag Archives: disability

#MillionsMissing 2019

We are the disappeared The vanished The millions missing Blink Snap your fingers Gone Do you miss us? Does anyone ask what happened to us? Does it cross your mind that we are still very much alive? We think of … Continue reading

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The Best Holiday Ever

Getting a puppy was not in the plan. My husband and I already had a dog (Fargo) and a cat (Lucas). The plan was for my parents to pick out a dog, and I just went along to help since … Continue reading

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After The Afflicted Freak Show

Many people in the chronic disease community were anticipating Afflicted, the Netflix series about seven people with poorly understood illnesses. In light of Jamison Hill‘s appearance in the show, the ME community hoped to build on the success of Unrest … Continue reading

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Better Late Than Not At All

Last night, I was really struggling to come up with anything to be grateful for. I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I … Continue reading

Posted in Occupying, Uncategorized | Tagged , , , , , , , , , , , , , , | 16 Comments

Book Review: Growing Gills

I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but … Continue reading

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#MillionsMissing 2017

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Preconditions, Burdens and Ableism

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or … Continue reading

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Pretty Much the Worst

One of the worst things someone said to me recently about my disability was: With all the stuff you’re doing, you work just as hard as someone working full time. The charitable and loving way to interpret this statement is: … Continue reading

Posted in Occupying | Tagged , , , , , , , , , , , | 42 Comments

Long Term Disability Insurance/ERISA

If you are fortunate, then your employer provides you with disability insurance. When you become disabled, this insurance pays you a percentage of your salary, and you are not solely dependent on Social Security Disability. In real life, it is … Continue reading

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Two Is Better Than One

My confidence in two-day cardiopulmonary exercise testing (CPET) is pretty obvious on this blog. A new study from ME/CFS experts Dr. Chris Snell, Staci Stevens, Dr. Todd Davenport, and Dr. Mark VanNess supplies hard data that shows how important a … Continue reading

Posted in Research | Tagged , , , , , , , | 10 Comments